Cancer Language

I have written something about the use of media accepted language of cancer which I have said I won't post as I'm waiting to hear back from a newspaper and magazine about if they want to print it.  It's still circulating in my mind though. 

I was recently asked to take part in a survey as I am a cancer sufferer. Urgh. My initial response in my head was ,no fuck off. I fucking HATE that phrase. And then took a breath and thought. It's not your fault you use it. It seems to be an accepted phrase that everyone is happy with. Until you speak to those who have or have had cancer (I nearly wrote cancer community *vomit*) and you realise that actually we hate it. 

Those of you who read this regularly or follow me on twitter will know I have my own language I use. My recent bout of chemo plague is going, thank god, and I no longer look like a spotty teenager. I think it was from my new drugs that my body is adjusting to. 

On the new drugs front. All seems to be ok other than my old buddy fatigue. Now. I would like it if that fucked off! I have stopped feeling sick and no longer have prickly skin on 100mg, 200mg was definitely too much for me. I am so happy my consultant went from the, let's build you up slowly and see how you go approach rather than start at the standard dose of 500mg and we'll reduce if you have any side effects option. That was the approach of my old consultant. I am so relived I have my new consultant. Last night I emailed her a non urgent question about exercise and she replied in TEN MINUTES!!! On a Friday night! Amazing. Truly love her. So much. 

Leukaemic rate result in just over a week which will be the true sign of how the new drug at the lowest possible dose is doing. Fingers crossed. 

Anyways. I have digressed. Back to language. 

So I hate the 'accepted' language but I also don't like it when people say 'fuck cancer' either. Possibly strange because I swear so much. But it's true. Maybe it's because I have lived with it for so long and have such unusual treatment that I can't think about it like that. I wouldn't change my diagnosis. And I know not many would say that. But it's true. Maybe it's because I haven't had invasive surgery or intravenous chemo and radiotherapy. Maybe it's because other than fatigue I can get on it with. I don't really have any scars from it literally or metaphorically. And when I read fuck cancer I grimace and my stomach tightens because it doesn't sit well with me. 

But then who am I to say what is right or wrong when another is using it because it is right for them and how they feel about having had a diagnosis. 

I'm writing this because I need to get it out. Not to say that people are wrong to say it when they themselves have or have had cancer, it's just not my approach and attitude towards the cancer I live with. 

Life would be boring if we were all the same though. Right?

So I sign off as always with love and hope. And I suppose because in a weird way I love my cancer as it is part of me I can't have this angry fuck you attitude towards it. It's lurking in my blood stream. Maybe in my left leg or my right little finger. I don't know. And because I love me. For all the whinging I do about my appearance I do. And I love all the good that has happened since my diagnosis and all the wonderful things I have done and people I have met. It's truly amazing. And I love that I can make a difference and do. 

And hope. Because I always have that too. Not just because I got it tattooed on me. Sorry Mummy. I hope that I will be able to become chemo free. I hope that no one else experiences the shit that I did. And I hope that those who face a new diagnosis do get better and that their treatment works. I hope because without it there is nothing. 

XxX

Easter Musings About Hideous Chemo and My Weight

Well my bloglets,

I wasn't going to put this on here, I was going to wait and see if a paper would be interested in publishing it, but I have decided that I want you to see it now and I can write something else if a paper is interested in me writing for them.  I wrote it nearly a week ago on Easter Monday.

I say I wouldn't change my diagnosis. And I mean it. Too much good has happened because of it. Sounds mental?  Well. I am a bit.

Today I am sitting in the sunshine writing this, remembering another sunny Easter weekend 8 years ago. I will forever remember this Easter as I felt so fucking awful. Intolerant to the chemo I was on. Ignored by my consultant about the severity of it all. Just told to take more pain killers. More frequently. Higher doses. No you don't feel like that because the research says you won't and you should be feeling better than you ever have.

The pain. I can't describe it. In every nerve and muscle. In my bones. I could hardly hold a glass of water it hurt too much.

I wanted to die. To escape the pain. I had relief from it twice a day when I had a hot bath. One in the morning to get me out of bed and downstairs, then one again at night to get me back up to bed. This was my motivation not to be an ill person in bed. Not that the pain left at night. I would wake up every time I turned over. And take more pain killers. I was only on that chemotherapy for about 3 months. It felt like forever.

I was taken off them by an on call registrar at the hospital. I couldn't get the words out down the phone because I was crying so much. My sister took the phone and spoke to them. He said stop. Why are you still on them? I don't know who he was. He was responsible for me getting my life back.

This part I would change, to be able to come off that chemo when I first started showing intolerance not nearly 3 months later.

I'm a bit mental about my weight. I was fat as a child. An emotional eater due to emotional trauma. I now know what triggered it and have had therapy about it. I'm still working on it. Getting better though. My internal chat is kinder than it was. I still get pissed off with myself though when the hospital scales show I've put on weight. I hate them. Digital to two decimal places. So unnecessary. They don't need to weigh me. Well. At least I don't think they do. It doesn't impact on my treatment.

In a weird way I'm grateful to my diagnosis. To my cancer. I know. Fucking weird. I did warn you. It meant that without trying I lost loads of weight. Down from a size 14 to an 8-10. About half a stoneish lighter than I am now. But without trying. It gave me confidence. Being thin. Not feeling fat all the time. Trying on clothes and they fitted. Didn't have to struggle to do up the size I had taken from the shop floor as I didn't want to admit to myself that I was a size bigger.

I had a photoshoot recently for an article. I was worried about trying on trousers for it. I have a bit of an odd body shape. All legs. Short torso and a high waist. Would the trousers fit? Should I have said I was a size bigger? Will I hang over the sides? They did fit. No hanging over the sides. I'm a size 10 for trousers. And yet. I still feel a lot of the time that, well, not that I'm fat, but that I could be thinner. And it's true. I could be. I have been.

After I came off the fucking hideous chemo and the pain began to fade I stopped taking the pain killers. I didn't realise my body had become addicted to them because they didn't work. Even though I was taking dihydrocodeine and ibuprofen about every 2 hours. They didn't kill the pain. So when the pain because manageable. I stopped them. Ironically. I don't really like taking drugs even though I have to take chemo daily. Anyways. I was a junkie going cold turkey. I spent 3 days vomiting, shivering, and also had awful diarrhoea. I now know why people get addicted to pain killers. I also went down to 8 and a half stone. I'm about 5ft 6 or 7. And I felt fucking BRILLIANT!!!! You could see my hip bones, my stomach was slightly concave and that was bliss! For me. Apparently I was too thin to everyone else.

It was only temporary. After being able to eat again the weight came back and part of me, still, even 8 years later, strives to be than thin again.

The fucking fashion industry and glossy magazines and Photoshop have a lot to answer for.

I have also recently put on a bit of weight which fucks me off. I was 9st for months and could eat what I wanted due to a stupidly stressful degree. Those days of a share bag of chocolate amongst other treats to keep me going are long gone. If I do that now. I put on weight.

I have been good with my running though and thought I had actually lost weight. Then got on the scales. Fucking idiot. 9 stone 6 pounds. Not happy. I want to be at that magic 9 stone again. And I know that muscle weighs more than fat. And I know I should go by clothes not scales. I know all of this.

And yet.

But in some ways I think it's better for me to be concerned about my weight, no matter how ridiculous I'm being. And I know I am. 100%. Than to worry about other things. Like will I ever be able to come off the pill chemotherapy that I take. Daily.

With love and hope,

XXX